Integrated Voices – Can you help us create a resource for people who hear voices and those who support them?

REPOST from Hearing the Voice: 

Rai Waddingham, who is a member of the editorial board for our new project Integrated Voices, writes:

In my experience, at least, the availability of information on the internet can bring with it both opportunities and risks. To someone hearing voices for the first time, or their loved ones, getting decent information about the experience and the different options out there is a real challenge. Whilst there are many sites I signpost people to, I’m ever aware that it’s a matter of luck as to whether anyone finds these on their own. More than that, if you happen upon a site that encourages a single approach you might leave with the idea that this is all there is. At the moment, there is no single site that gathers together a range of ways of understanding and working with voices. That gap has some serious implications. Information about the full range of options is a key part of informed choice. It is information that can lead us to ask for specific forms of support, and campaign when we find out they’re not available in our local area.

Hearing the Voice is launching a project that has got me both excited and daunted (called Integrated Voices). Its aim is deceptively simple – create a clear, balanced and impartial website with a range of modules that focus on different approaches to understanding or supporting people who hear voices. A website where we are not pushing or promoting any particular option, but are laying them out on a buffet table and trusting people to find the ones that suit them best. A website that is not overloaded with information, that is easy to navigate and signposts people to further sources of information on the approaches that interest them. Ultimately, in the jungle that is the internet we want people to find ideas that could really work for them.

From the way I write, I hope you can see why I’m excited. I really feel this could be a useful resources and am glad to be supporting them in developing it. My nerves are real, though. One of the reasons this site does not already exist is that it’s a massive undertaking. There is so much information and so many possibilities that knowing where to start is difficult. More than this, I’m also keenly aware that whilst we’re aiming for an impartial site, none of us are neutral. We all have our interests and perspectives. If we were to sit in a room for a year and design the site ourselves our biases would be clearly visible in the content of the site. As human beings, we’d skew the information without even realising it. All of the choices made by the editorial team have consequences, and if we want the site to be as useful to as many people as possible in our community we need your help.

 Consultation Events

It is only right that we speak to as many different people as possible before we even begin planning the Integrated Voices website. So, before our pens touch the paper to draw up content ideas we’re going out and about to hold three consultation events, in Bradford, London and Newcastle upon Tyne. These events are a chance for people who hear voices and the friends and family who support them to share what they think would be useful from a site. If your work involves supporting people who are distressed by their voices, we’d also love to hear from you.

Facilitated by Mary Robson, Victoria Patton and myself, we’ll be doing our best to create welcoming spaces where we can think together about your hopes (and fears) for the site. We can begin to build up a picture of the information and topic areas that you feel are essential, as well as the things you feel we should either avoid or be very careful of. If you would like to get involved in these events, information about dates, times and venues can be found at the bottom of this post.

Online survey

For those who either can’t or don’t want to take part in these events, we also have an online survey for anyone who is interested in this project. The survey is available to complete here. Share it with your friends, family, clients, support workers, CPN and anyone you think might have an opinion.

 Why take part?

Whilst later on in the process we will be convening focus groups to help us develop and test the site, and will be able to offer vouchers in thanks for the work done, at this stage we hope people will take part because they feel that this could be an important resource and want to help shape it. We can offer reimbursement of reasonable travel expenses and some refreshments at the consultation events, but above and beyond that we’re asking for your support to help ensure this resource is as useful as possible. Our commitment to you is that we will listen to the feedback and use it in a meaningful way to develop the site, and ensure there are opportunities during the project to get more involved.

One thing I hate about consultation is the number of events that talk to us after decisions have already been made – those tokenistic events where we’re being asked to rubber-stamp something that we neither want nor agree with. Those events where our voices aren’t heard. This project’s success rests on our ability to engage with as many people as possible and – most importantly – to listen.

So, whether you fill in the survey or come to a consultation event, we’re looking forward to hearing from you.

Hearing the Voice will be holding three open meetings to discuss Integrated Voices with voice-hearers and those who support them in Bradford, London and Newcastle upon Tyne. The events will take place at the following venues and times:

Bradford
Thursday 5th October 2017, 1-3pm

Mind in Bradford
Tradeforce Building
Cornwall Place
Bradford
West Yorkshire
BD8 7JT

London
Friday 6th October 2017, 2.30-5pm

National Council for Voluntary Organisations
Society Building
8 All Saints Street
London
N1 9RL

Newcastle upon Tyne
Thursday 12th October 2017, 1pm-3pm

The Recovery College Collective
5th Floor, Broadacre House
Market Street
Newcastle upon Tyne.
NE1 6HQ

If you would like to attend one of these events, please let us know in advance by registering here. We hope you can make it!

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General Interest Meeting September 14th

General Interest Meeting
What: 
Come join us for a Hearing Voices NYC General Interest Meeting! General Interest Meetings are different from our Support Groups. They are a place for anyone interested in the Hearing Voices Movement to come & hang out. We welcome voice-hearers, family/friends, clinicans, activists, allies, etc.
What to expect? : 

A simple circle of chairs & group diaglogue about voice-hearing and building up the HVN community in NYC. All welcome.

When: September 14th, 2017, 6:30-8pm
                   425 Ave of the Americas (@ 10th Street)

Voice-Hearers Needed for Consultation & Collaboration

Many people who hear voices say that they sometimes “talk” with, “communicate” with, or “interact” with their voices. This might be out loud, or silently. We are interested in learning more about these experiences.

If you have ever talked with your voices – or had someone else talk with your voices – we are interested in collaborating with you on developing research questions for our study.

We are part of an international working group focused on learning about the different ways people interact with their voices. Some of us are therapists, some voice hearers, some researchers (and some of us wear several of these hats). This is not a research study, but a way you can help collaborate with us on what you think we need to learn about people who have had conversations with their voices.

This survey is a series of open ended questions about “talking” or “interacting” with voices (or what is sometimes called “voice dialogue”). All questions are completely optional, you do not have to answer all the questions to participate. We also welcome extended conversations, as well as interest in collaborations with us. For more information, please email Nev Jones at nev.jones@yale.edu

Thank you on behalf of the International Consortium on Hallucination Research Working Group on Voice Dialogue,

Berta Britz, Dirk Corstens, Felicity Deamer, Marie C. Hansen, Nev Jones, Sarah Kamens, Simon McCarthy-Jones, Sohee Park, Liz Pienkos, Cherise Rosen, Rajiv Sharma, Neil Thomas, and Angela Woods

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Free Creative Arts Therapy Group for Voice-Hearers

Starting August 1st, we will be offering a free creative arts therapy workshop to individuals hearing voices, seeing visions, and having other experiences often referred to as “psychosis”.

The group will incorporate drama, movement, art and music as ways to externalize and concretize phenomena often difficult to put into words.
 
There are few free services of this nature available, and we are hoping to reach folks who might not otherwise have the chance to explore their voice hearing experiences creatively.
 
Meetings will be held weekly:
Tuesdays at 4:30pm
East Village Access (EVA)
242 East 2nd Street, between Ave B & Ave C
 
For more information, please contact Tami at tgatta@communityaccess.org

THEY HEARD VOICES.

Co-sponsored by ISPS-US and Hearing Voices NYC:

THEY HEARD VOICES is documentary film exploring the Hearing Voices Movement, chronic psychosis and the schizophrenia label. The film is a series of wide-ranging interviews with voice hearers, medical historians, anthropologists and psychiatrists from Britain and America, presenting different people’s views.

Panel with audience Q & A will follow featuring members of ISPS-US & Hearing Voices NYC:
Matt Estrada, Tami Gatta, & Peri Zarella

TRAILER: https://vimeo.com/185557072

In celebration of Worldwide Creative Maladjustment Week
(July 7-14)

When: July 13th 2017

Where: Jefferson Market Library 425 Ave of the Americas (6th ave & 10th Street)

Cost: FREE

 

ISPS is international organization dedicated to development and promotion of social and psychological approaches to experiences that get called “psychosis”.

ISPS-US is the North American Chapter of ISPS and is active organizing events in North America, members include professionals of all stripes including: psychologists, psychiatrists, nurses, social workers, OTs, therapist and a whole bunch of others; as well  as experts by experience,  family members and carers – everyone. You can join too.
Membership of the ISPS-US automatically includes membership to ISPS international, so you get the best of both.
ISPS-US holds annual conferences , this year’s conference is in Portland, October 2017. ISPS hold international conferences biannually – next one is in Liverpool.

 

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Thank you, Jacqui!

Photo by David C. Leon

A huge thanks to Jacqui Dillon for coming to speak to our community yesterday at Jefferson Market Library. Over 50 people attended the full-day workshop which focused on the history, ethos, and group format of the Hearing Voices Movement.

Jacqui mentioned some important resources during her talk, including:

  1. Eleanor Longden’s TED talk : Longden tells the moving tale of her years-long journey back to mental health, and makes the case that it was through learning to listen to her voices that she was able to survive.
  2. Tanya Luhrmann’s article on how culture influences the voice-hearing experience. Including the differences across the US, Indian & Africa
  3. Living With Voices: 50 Stories of Recovery A book she helped co-edit which tells the stories of many people’s experiences with voices
  4. The Mysterious Skin : A Gregg Araki movie. Plot: Brian Lackey is determined to discover what happened during an amnesia blackout when he was eight years old, and then later woke with a bloody nose. He believes he was abducted by aliens, and N. McCormick, a fellow player on Brian’s childhood baseball team, may be the key as to exactly what happened that night. As Brian searches for the truth and tries to track him down, Neil McCormick takes up hustling and moves to New York, in attempts to forget childhood memories that haunt him. Together, the two of them uncover the terrible truth of the scars they share.
  5. The 2017 Hearing Voices World Congress Website: Where you can register for the upcoming international conference happening this year in Boston! August 16-18
  6. The Hearing Voices USA Charter:  “Above all else, what defines a group as an HVN-USA Member is whether or not they operate in a way that is consistent with HVN values and approach.  This Charter, adapted from the hard work and careful thought of many individuals connected with HVN England, identifies the qualities that define both affiliated and full group membership within HVN-USA.  Only groups that clearly state that they follow the terms of this Charter will be listed on this site or considered to be HVN-USA members.”
  7. The Self Reflection Tool used for people to establish their readiness to facilitate or co-facilitate a Hearing Voices group. This can be used when formal training is not available.

Our follow-up event is happening soon:

Dinner with Matt & Peri! **Limited Seating**
RSVP: mariehansen [at] me [dot] com 
Matt & Peri are going to talk about their experiences running a Hearing Voices group in a community setting (Max Caffe!)
and can answer any questions people have about starting groups. If you are a current or past facilitator, consider coming to help
teach new people about how to run groups. If you are a new facilitator, come by to learn from current facilitators.
Chill, laid-back discussion & community gathering
Wednesday 6/14 6:30-8pm
 
**You must order food if you come we want Max Cafe to keep liking us** 
 
Location: Max Caffe: 1262 Amsterdam Ave New York, NY 10027
Jacqui will be returning to New York on October 19th 2017– Stay tuned! In the meantime, Hearing Voices NYC is working on getting a 3  day facilitator training. Check back here for more info.

Schreber Live! A Celebration of Memoirs of My Nervous Illness

“In what circumstances can a person considered insane be detained in an Asylum against his declared will?”

-Daniel Paul Schreber, Memoirs of My Nervous Illness

This past weekend, Hearing Voices New York City, along with the International Society for the Psychological & Social Approaches to Psychosis and Das Unbehagen, staged an event called “Schreber Live!” which celebrated Daniel Paul Schreber’s first person account of “madness”, Memoirs of My Nervous Illness. The event took place at the Jefferson Market Library and featured lectures, performances, visual art, poetry, and dance. One of the main features of the event was people scattered through-out the building, reading passages from the text. The purpose of the event was stated during the introduction:

“Schreber’s book–which is at once a memoir, a historical document, and a judicial treatise in support of his release from the asylum– is one of the most widely-known and cited first-person accounts of what is commonly called “madness”. Like the book, the Jefferson Market Library, is not only a location for literary pursuits, but once served as a court-house during the 1800s. In the garden behind the building stood a women’s house of detention, demolished in 1973. The brick-arched basement, served as a holding cell for prisoners on their way to jail or trial. In more recent times, the library was also the site of first community-based non-clinical peer-support group for voice-hearers in New York City.  Today, as we celebrate Daniel Paul Schreber’s book within this courthouse-turned-library, there is a sense of redemption, of his words being taken seriously, given their rightful place not only within a literary institution, but also within a lawful one.”

The event brought well-over 150 people, many of which stated the power of reading Schreber’s words inside an old courthouse:

“It was amazing to be in that space and in those strange and tragic and wondrous discursive spaces, modern and old.”

“It was quite powerful for me to read Schreber to all who passed by and some who stopped to listen a bit.  I loved hearing other readers and dropping in on whatever section they happened to be reading.  The whole event was really great.  Schreber would have been, and was, at home.”

“…it was a powerful experience. It truly felt like Schreber’s life, work, and experience, and the representation of those of others who have had similar experiences , were honored via this event.”

Images of the devices Schreber’s father created for child-rearing
Participants in a one-act play of Chapter 21 of the Memoirs
Gregory Shankland speaking on his own experiences of voices